This interview was originally published on May 11, 2020, by Sage Ocean.
SAGE has announced the 2020 winners of its Concept Grant program, which provides funding for innovative software solutions that support social science research. This year, £15,000 was awarded to scale up one winning tool, Knowsi, and five further grants of £2,000 were awarded to early-stage software ideas that support the use of computational methods in social research.
In this blog, the creator of Knowsi, Andrew Lovett-Barron, explains how he uses new technologies and design thinking with Knowsi to improve a very routine but critical part of the social science researchers process, and how the Concept Grant will support that.
Knowsi is a portal for researchers and participants to manage their consent relationship. It’s a platform built out of my own experience as a design researcher seeing first hand how the friction of administrative requirements led to poor documentation, confused participants, and missed opportunities. Knowsi aspires to make the process of collecting participant consent simple and consistent across projects and to keep research compliant with progressive privacy legislation like the General Data Protection Regulation (GDPR) and California Consumer Privacy Act (CCPA). Knowsi makes respect for the consent of research participants as easy to implement as it is to say.
Informed consent is the permission a participant gives of their own free will and with sound mind to be subjected to something such as sharing personal information or participating in an experiment, given an honest disclosure of what that participant is going to experience and what will come next. Under legislation like the GDPR, consent is also something that is living: a participant must be able to withdraw or otherwise change their consent as well.
Today, gathering consent is often done via paper. A participant is handed a consent form with a disclosure of information and a request to sign over information rights and media release. Ideally (though not always) the participant will get their own copy, and there will be little recourse for withdrawing that consent short of seeking out the individual researcher — leaving participants disempowered and without an obvious means to follow up.
For a research team, managing the records of consent becomes its own administrative task: coding and transcribing data, ensuring both anonymity and traceability, validating that consent was given for media to be used (if needed), and ensuring that the data is discarded at the appropriate time. Qualitative data is difficult enough to sift through purely for insights and information, so the complexity added for administration to support the privacy of participants becomes an extra burden.
Gathering good and consistent consent is important. It’s mandatory in an academic setting, it exposes considerable liability in the private sector; it can make participants uncomfortable and impact the outcomes of a study; and finally, it’s foundational to ethical research.
Legislation like the GDPR and CCPA is an important step to mandating good consent practice, but it also introduces operational complexity. One example is that it states that consent should be as easy to withdraw as to give, while not providing clear guidelines on how exactly a researcher should accomplish this. Without mechanisms to automate, this can create unpredictable complexity when dealing with participant relationships and scaling issues for large internet or remote studies.
Knowsi solves many of the operational and administrative challenges of good consent practice. First, Knowsi makes it easy to collect participant consent through a simple and readable form that participants can sign in person, receive through email, or access via a link.
Upon signing the form, a participant will receive a receipt with their own copy of the consent form and the ability to update their consent, connect with the researcher, and request their data.
The researcher, meanwhile, gets a summary of their participants’ consent on their dashboard, can track goals and deadlines for the research project directly through their project dashboard, and reach out to participants for future studies or contact (provided they’ve consented to that).
Today, consent in both the private sector and the world of research is still frequently done by paper or through ad-hoc tools like Google Forms or Airtable. Paper has its obvious downfalls especially when researching at scale, and while these tools have a place, they are insufficient for the task and the increasingly regulated domain of informed consent. Some tools exist for tracking consent in clinical studies, but they are cumbersome, expensive, and specific to the needs of clinical environments.
Knowsi is focused on providing the best consent experience for both researchers and participants, and has demonstrated this so far through early customers and beta testing in Denmark, the UK, and the US. By framing consent gathering as a user experience problem, Knowsi is well-positioned to do what great administrative software does best: disappear into the background with the problem it was designed to solve.
So far, the main users of Knowsi have been user researchers and students. This is partially due to my own background: as a design researcher myself, it was a community I knew. The other specific users group we pursued were photographers and videographers who are required to collect a media release.
However, as I built Knowsi, its utility for academic research became obvious, especially as potential users from the social sciences and clinical research domains inquired about and tested the tool. While clinical research might be some ways off for the technical integrations required, our near term horizon is building a comprehensive and accessible experience for academic researchers with the right mix of tools and integrations to be the obvious choice for their research needs.
As a design researcher, I was always frustrated by how we treated consent and our research participants. Being a research participant can be uncomfortable; you are often providing incredibly detailed personal information to a stranger in exchange for a form stating (broadly) how your private information will be used, and perhaps some cash or a gift card. Researchers are also incentivized to be maximally extractive of information, with the principal that it will drive better quality research outcomes.
The power relationship between researcher and participant is already asymmetrical, but it doesn’t need to be zero sum. My idea with Knowsi was to create a tool that made the experience and outcomes better for both researcher and participant by providing clarity and continuity of intent to participants, eliminating administrative overhead for researchers, and automating as many of the uncomfortable parts as possible.
Now that a public beta has launched, the SAGE Concept Grant is going to be vital in helping us reach what we believe will be a primary user group: social science researchers. While Knowsi has been used successfully in the private sector and by design students, we still need to build in the right tools, workflows, and templates for universities to properly benefit from Knowsi — both from a researcher experience and a procurement perspective. The SAGE Concept Grant will help us bridge the gap between the current public beta and an enterprise level tool that universities and other institutions can feel confident implementing.
I was originally contacted as part of Dr. Daniela Duca’s research into startups for the SAGE community. While I had known about SAGE’s work in publication and academic support, I hadn’t realized how deeply SAGE was involved in cultivating the future of research tools. I learned a lot from Dr. Duca’s expertise and knowledge, and it had already helped inform some of my thinking when the Concept Grant email popped up in my inbox. I saw the grant as an opportunity to of course benefit from the financial support to build the tool, but perhaps more fundamentally to borrow SAGE’s insight and expertise of the research community; which would most benefit from Knowsi and where I want it to grow.